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If the shoe fits.

I need someone to follow me around and say no for me when I get crazy notions to just keep pushing. But at the same time I need someone with me to say “Janet, get off the couch!” When I have become so lazy that I start feeling crappy just because I haven’t moved in a long time. Why do I have no happy medium. I’m either on, or nonexistent. 

I’m like this in absolutely every aspect of my life. My biggest flaw right now is that I do this with people. If I decide that we are friends, I trust you completely. I will tell you absolutely everything about myself. I will go out of my way to always stick up for you even when I disagree with you. Because now you are one of my people. 

The hard learned reality however is that this is not a 2 way street. Sometimes it is. And then that is glorious! But most of the time not. 

So I have decided that….for a little while…..I will be an observer of my life. Sounds strange, I know.

I need to focus on my health. Stop letting other people’s drama affect me. A good friend has a saying “Not my monkeys, not my circus.” I need to remember this.

I had my 6 month Neuro appointment last week. Between constantly telling me how lucky I am he told me that my brain was retraining itself. It is learning to go around the frayed nerve fibers. This is why my hand is getting so weak. Why my left 3 fingers are almost useless now. The OT said that I should use a resistance ball for an hour on each hand every day. I looked up some exercises that I need to start doing with my hand too. Screw you brain! I’m going to prolong the abandonment of my hand for as long as possible. Also between “you are very lucky”‘s he told me that it will get worse over time. But, I’m not getting new lesions. He’s not wrong. I had a momentary wallowing in self pity though. 

Fine, loose my left hand. But my left foot? Ok and both? I won’t be able to move myself around in a wheel chair. I’d need a scooter. And a new freaking house! 😦 but I came up with a solution. If I could put a brace on my left foot that kept it straight then I could use a cane with my right hand. I’ve got this! Wallowing over.

Observing life. 

Trying to figure people out. 

I have always liked the fact that my immediate reaction to people is notice what’s good about them. But I need to stop ignoring their flaws. Sometimes the red flags are there and blinking and waving, yet I still ignore. I figure they will go away. At the root of it I know this is a great person, they will get over this faze. 

 “No!” They won’t. And even if they do first they are going to take you down there destructive little path. 

Run!

Observe.

Do hand exercises.

Love your family!

Do what you know is right.

Observe.

Avoid other people’s monkeys.

Learn to have a happy medium!

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Posted by on July 5, 2016 in Life with MS

 

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Recovery

Ahhhh the life of an MSer. 

I freaked my husband out recently. Tears and all. I feel bad about it. Sometimes I feel like I’m loosing it though. Like I literally have no grasp on reality anymore. Of course that’s not why I freaked out. My left foot has been getting worse. I now have to think about picking my foot up when I walk. Curbs and stairs hate me! I haven’t fallen. But every time I walk up or down stairs I picture myself falling and exactly how I would hit the ground and exactly who is around and how embarrassing that would be. But in my attempt to stay healthy and active I am still taking the stairs instead of elevators. This may just be part of my stubborn streak. If something/one tells me I can’t do something then that’s all I want to do. Even if it’s my own body. Even if it’s just stairs. 

I also am very thankful that I am right handed. My left hand no longer has the ability to hold things except in a grasping fist type fashion. Something like a pen or pencil would be out of the question. Coffee mugs by the handle are out of the question. The weakness in my left three fingers is constant now. 

This is why I freaked out. I am aware that MS is a degenerative disease. I thought that because I’m young the lesions that I already had would heal. Or at least not get worse. Now that I’m on Tysabri and my damn immune system can’t get into my brain or spine I thought great, I’ll be ok. I know I’m being naive. Isn’t this how we all want to think though? Now I wonder, is it going to get worse? 

My husbands advice is to get back to being more active. He’s not wrong. I kinda crashed after last month. I really pushed too much. The recovery took significantly longer than I thought that it would. 

Let’s think about that for a second. What was too much for me? I ran 2 book fairs at different schools back to back with a few overlapping days. During this time I also had meetings and events for Board of Ed. Now that’s not any more than a normal person with a job has to do on a regular basis. However it took me a month to recover from it. 

That is what I hate most about this. Take my leg and hand. Give me back the ability to have my crazy full life. I love my crazy full life! 

So back to it. The month is over. Back to running. I miss it. Maybe it will help. You know what they say about bodies in motion. 😉

 
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Posted by on April 12, 2016 in Life with MS

 

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Easter Memory

When I was younger I was part of something very special. It was the mother of all service learning projects. They called it “Service to the suffering”. The Diocese of Trenton, a Roman Catholic thing, ran this event with our CCD groups. When I look back at that time in my life I feel very fortunate to have had such a moving experience.

“Service to the Suffering” was held the Thursday, Friday, and Saturday of the Holy Week before Easter. During these three days we would meet together, all of the kids in CCD from the entire diocese. They would split us up into groups. Dividing us from our core CCD groups so that we would meet new people. 

Our newly formed groups would all gather on buses where we would then be shipped off to different locations. All of the places would be somewhere that could use a little TLC that could be accomplished by teenagers. 

My fondest memories of places:

A community pool. We cleaned out the drained pool, painted picnic benches, and raked the expansive lawn. Now that sounds like hard work right? But what I remember is the massive paint fight that my new best friends and I had. Everyone was covered in red paint!

We went to a psychiatric hospital where some of us cleaned the grounds while others sat inside with the patients and did crafts or played games. I was on the grounds crew. Dealing with other people was never one of my specialties. What I remember most about this day was that a boy in our group that I had a serious crush on made me book marks during his craft time. 🙂 I was a teenage girl. 

In my last year I remember being given the honor/burden of getting to carry the cross all day one of the days. 

Every day they pick one kid who gets to carry the cross for the whole day. It was their way of giving us just a small taste of what Jesus had to go through and symbolism for everyone bearing their own crosses through life. 

This cross was no joke. It was a 6 foot tall thick pieces of wood, honest to god you could nail someone to it cross. We don’t play around at Service. 

At the end, on Saturday night there was a big dance. Always a highlight in my book. Of course there was a mass at the end of every day, which was always amazing. When you put hundreds of kids together that really believe and feel it, it can be very powerful. 

Even though my faith is nowhere near what it used to be that is a feeling that I will always hold dear. 

Having this experience was something so powerful and wonderful. Now that I am a mother of “almost teens”, I find myself longing for this kind of experience for my kids. I wish that I could find something for them that would give them the memories and profound emotions that this event held for me.

 Happy Easter

 
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Posted by on March 27, 2016 in the little things

 

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Quick and Dirty

MS Sucks when….

You are so tired that your hand won’t stop shaking and you can’t lift the coffee cup to your mouth. 😦

 
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Posted by on March 25, 2016 in Life with MS

 

Sight

20/25 20/30
Can you believe it?!?!
I get excited that I can tell there are letters. Honestly, I get excited that I can see more than just a large white square! But 20/30? That’s nuts! It’s a miracle!

Yeah, so today was my follow up visit with the eye doc. I haven’t been wearing my contact as often as I should. So I walked into this appointment not expecting much. I certainly wasn’t expecting my vision to be even better than last time. Only by 2 lines, but wow! 

The Doc said that it probably won’t get better than it is now because of the nature of the scar. To which I said, um, I went from 20/260 to 20/30. That’s a miracle. I’m good! 

Of course there are slight set backs. There is so much more visual stimulation when I have my contact in that it really wreaks havoc with my brain. I’d say it cuts my spoon supply in half. 

*If you don’t know what that means read this; Spoon Theory.”

It is still totally worth it for me to wear it though. With it in I have normal vision. I am still getting used to using my right eye. It feels very unnatural. When something comes into my field of vision on the right side it still freaks me out. Depth perception is no longer my friend. I was so used to only using my left eye, I had adjusted. But now that I’m using my right eye I can’t judge distance. Then I take my contact out and my brain keeps using my right eye and I feel like I’m blind. So mental adjustments need to be made. It takes a little while either way right now. I’m afraid that with more frequent use I’ll really have problems when I don’t have the contact in. 

But just like Tysabri this is my momentary band-aid and I’m loving it! 

Normal vision. Ha! I love it! 

 

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Tysabri or Bust

  
I am attempting to live in my own little world right now. I am craving that hut in the woods.

Some how I managed to set the bar too high. Not somehow. I do what I want, and how I want to do it. That is what set the bar too high. I am blessed to be able to do this. I love everything that I do and I want to do it great. Normally I feel like such a slacker. There are so many more things that I want to be doing, so many more things that I want to be learning! Right now however, I just want everyone to expect nothing from me. Right now I am capable of nothing. 

My infusion had to get pushed back a week. Which I know explains everything. Thank goodness I am here now. A friend of mine posts at every infusion how unhappy she is at infusion time. I don’t understand this. I look forward to my infusion like a life raft. I am terrified of the day that they take me off of Tysabri. 

This thought is what filled my mind on the way here today. Sometimes I wonder if it would make a difference. Do I only notice things that are wrong with me because I’ve already been diagnosed? My whole life I have been the “suck it up and deal” kind of person. I am still that kind of mom. “Is it broken? Are you bleeding? No, than stop complaining.” So why is it that now I am so sensitive with myself? I can still walk, talk, breath, eat, see. I can do everything! Is that because of the Tysabri? Probably. Let’s not think about it, right? 

If I am honest I know that the dizziness and the fatigue are not normal. But is it something that would send me to the doctors if I wasn’t diagnosed? No. Not ever. I’m surprised it did 6 years ago. Of course back then the crap with my eyes and the fact that my face went numb would have sent me. When I think about what I am going through now though, there would be no doctors. 

I feel very, very fortunate with my life. That said, I crave some serious alone time. No responsibilities. No, don’t worry about it Janet will take care of it. For a little while I’d like to be in my hut in the woods. 

Don’t worry world I’ll be right as rain tomorrow. Tysabri is coursing through my veins as I type.

 
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Posted by on March 15, 2016 in Life with MS

 

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C25K week 2

I just finished week two day one!

On infusion day!

I’m not going to lie though. I did almost cry half way through. And on the last stretch of running I could no longer flex my left foot. So yeah for thigh muscles.

Week two is a five minute warm up walk, followed by alternating 90 seconds of running and two minutes of walking for twenty minutes, ending with a five minute walking cool down.

I made it the whole way. Yes I’m a day behind and that means that I am going to have to run again tomorrow. The day after my infusion. The worst day of the month for me. But yet again I am arming myself with help. My mother runs with me on Wednesdays. I’ve got this.

Starting this new endeavor has already shown me that I can do more than I ever thought that I could. Sure I’m still at the beginning. But I haven’t given up. I’m still pressing through despite the MS. My future is feeling very positive right now.

 
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Posted by on January 12, 2016 in Life with MS

 

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